Living Normally With Diabetes

As I’ve mentioned, I have been spending the last month up here in Pennsylvania. I initially thought that I could wait until I got back to Florida to order my insulin, but that didn’t work out. So on Thursday evening I called to re order my insulin….but there were not any refills left.

Well here is the first issue. After my last visit to the endo they faxed prescriptions for test strips and insulin, so how is there 2 strip refills left but no insulin? That didnt make any sense to me but no worries let’s move on.

It was late on Thursday so my doc office was closed so I had to wait until Friday morning to get the renewed RX sent in.

I was running low on insulin so I figured that I would request the RX to be sent to a local retail pharmacy so that I can pick it up on Friday or maybe Saturday since Optum wouldn’t deliver it until Monday.

When I went to the retail pharmacy they told me they didn’t have enough to fill the order so there wouldn’t be enough until Monday.

Ok still no worries because I have enough until then.

So yesterday I went to the retail pharmacy to pick up my one into insulin order finally and she said, “ok that will be $110″

Huh, excuse me? $110 that’s supposed to be $10 or $30 at most. Apparently there is a $100 deductible on retail pharmacy prescription but not mail order. Well, there’s no way I was paying $110 for one month because I don’t ever use retail so that $100 will just be a waste.

Ok now it’s getting time to worry.

I called in to Optum RX to get the mail order filled instead of the retail and only need to pay the $25 for 90 days like usual.

I know that Optum RX has a 24 hour order processing policy but really, how long does it take to process an insulin order.

Well as I’m sure you guessed the order didn’t process and ship yesterday so now it will ship today and won’t be delivered until tomorrow.

So now I have a 90 day supply coming to me tomorrow but I don’t have enough insulin to get me by till tomorrow so I asked if there was a way to get one vial of insulin to get me through till tomorrow.

Their answer… Yes you can pick up the vial from the retail pharmacy and we will grant an override but you will need to pay the $100 deductible. Well thank you very much but that doesn’t help me at all because that’s what started this whole damn thing.

This is just ridiculous. I know it’s the policy and I know it’s the rules but I do not use retail and will not the rest of the year but I need to pay the $100 deductible for 24 hours of insulin.

I am fortunate enough to be able to pay the $100 deductible because I have no choice but what if I didn’t. What if I couldn’t afford the deductible, how would I get my insulin? That one emergency vial of insulin is a hell of a lot cheaper than the trip to the ER that it will cause.

I am being charged $25 for 16 vials of insulin but I need to pay $110 for one emergency vial?

I have been with UHC and Optum for well over a year and they can see that I haven’t filled any retail RX so it’s not like I am trying to get over on them some how.

At the end of the day I am grateful to have the insurance and only needing to pay the little amount that I do. I went 2 years with no health insurance so I know the feeling of spending $100 for just one vial, but this is why I pay several hundred a month for insurance.

For the last few weeks I have been visiting my family in Pennsylvania. This is where my diabetes all started 10 years ago when I was diagnosed before moving to Florida. This trip is part of my summer work-cation since my wife is a teacher and I can work from anywhere with wi-fi. I normally come to PA for only a week at a time but this is the longest time period that I’ve spent up here in 10 years.

Before leaving for the trip, it took me a while to make sure that I had all the supplies that I needed. I also made sure that I set calendar reminders for any refills that I will need because when I’m up here with friends and family, the memory tends to slip because there is so much fun stuff going on.

Since I’ve been home, I’ve still been wearing my Medtronic 530G because I am finishing up my trial with them. I have not been very good with wearing my sensor however. When I take the sensor off, I have been taking a 3-4 day break in between instead of putting it right back on. I have also been taking a day break in between each infusion set change because I just need that break.

As I mentioned yesterday, I have been going through a burnout phase where I just couldn’t take anything additional diabetes related other than my daily management, and even that was becoming annoying. Since my large weight gain over the last 2 years, infusion sets just fall off like nothing, so it has become very annoying that I go through 4-5 infusion sets a week at times. Taking the day off in between changes has really made that feeling go away and helps me deal with an infusion set falling off if it does.

All in all, I am happy with my diabetes management in Pennsylvania. I typically eat out all the time and at a lot of unhealthy places so my sugars are all over the place. This trip has not been so bad.

The last couple of months have gone by quick. It feels like the last 90 days has been about 2-3 weeks. Summers for me are always a very time consuming few months. My work actually picks up during that time period, my wife is off for the entire summer and I do a lot of traveling… just like most people do. This summer, however, has had a lot more traveling than normal, so I knew that I wouldn’t be able to keep up with blogging and tweeting and advocating and everything else that I normally do on a daily basis.

And ya know what? It felt so damn good to take this break. There have been plenty of times where I just felt overwhelmed with trying to keep up with all of the diabetes related initiatives that are always going on. I came to a point where I felt that I was doing something just to do it and I didn’t really have that much emotion or passion for whatever I was promoting or helping out with. I have a stack of about 5-6 diabetes related books that I just couldn’t read anymore because it was just too much diabetes.

After 10 years, these last few months have been my first real exposure to diabetes burnout. I just couldn’t take anymore diabetes other than the daily activities that I had to do to maintain a decent blood sugar. Do I want to go to the park with my nieces or read another post about the Scientific Sessions? Should I go out to the bar with my friends or write another post about my insulin pump? Should I hang out with my family and watch a movie together or chat online with others about diabetes?

To me, these answers were pretty damn easy to make over the last few months.

But, over the last few days, I have been missing it. I have began getting that itch again that I need to do something, I need to write something, I need to fight for something.

So, here I am. My batteries have been re-charged and I am ready to go. I know better than to just jump head first and go full speed ahead right away, but I am slowly getting more involved again and I hope y’all haven’t forgotten me too much!

I look forward to connecting and talking with you all again on a more frequent basis.

Back in January when I had the pleasure to attend the Medtronic Diabetes Advocate Forum, one of the focus areas was the Medtronic Customer Service and their StartRight program. During the presentation, I was very excited about how much effort was being put into the Medtronic customer service team. In the past, I have had some bad experiences with customer service. However, Medtronic was the first medical company that actually would allow an individual rep to email me directly, and for those that know me, email is my ONLY form of communication.

When I started back up on the pump trial a couple of weeks ago, I received a phone call, voicemail and email follow up from the StartRight team to make sure that I had all of my supplies delivered, I prepared for my training and to see if I had any additional questions or concerns. After the training occurred and I started on the pump, I received another follow up a few days later to see if there were any questions or concerns again about being on the pump or Enlite sensor.

I think that this is a great way to handle a new customer being on a product. First, making sure that they have everything they need to get started and then provided some follow up support after they have been using the product for a few days.

Obviously, I live on social media and when I have complaints or issues that I need taken care of, I use social media to attempt to communicate with a company. I actually prefer doing business with a company that will communicate via social or email instead of those that always just want to call and discuss things over the phone. Have I mentioned I hate being on the phone yet?

Medtronic has been doing an amazing job with their social media customer service. After the first few days of being on the sensor, I mentioned on Twitter that I didn’t tape the sensor down properly, so I received a reply on Twitter asking if there were any specific questions that I had, and then was provided a link to the Medtronic support page that provided more details about the taping of the sensor….perfect.

Then, it got better the next day. I then had an email from Medtronic titled – Additional Tape Tips.

This is customization at its finest. Although this was a pre-formulated email, it was addressed to me and made it feel customized and unique to my situation and my issues (PR companies, take note!)

Like yesterday’s prompt, I’m not much of an expert here. The life hacking tricks that I use for diabetes have all came from other people’s recommendations. I’m not on the Dexcom currently because of my trial of the MiniMed 530G, but when I am wearing the Dex, I use the glass trick that was mentioned in the prompt and by Kerri.

The only hack that I might have right now is that I use the tape that comes with the Enlite sensors to hold it down on my infusion set as well and it has helped a lot. I have always had issues with keeping infusion sets staying on my stomach, but this tape lasts pretty much forever.

The tape already has a hole in the middle of it, but I cut the piece of tape in half so that I can put half of it on the the bottom half of the infusion set and the other half on the top part. This allows me to not cover up the plastic part of the infusion set that connects to the tubing.

Other than that, that’s pretty much my only diabetes life hack. Hopefully you can find some more at the list of other posts from today for Diabetes Blog Week.

Today’s topic for DBlog week is Diabetes Mantra or what helps you get through any of those down times that you may be having with diabetes.

I don’t have many diabetes specific mantras, but I live life with a few. The most specific diabetes related mantra that I have is… “It’s just a number” and that typically is said when I have a high blood sugar. It’s just one single number and I can correct it and move on from it.

Today’s DBlog Week prompt is What Brings Me Down. I’ve always had a difficult time talking about the mental health and depression side of diabetes, because frankly, I rarely do experience it. I know that it sounds like a cop out, but I truly do filter out the negative thoughts into my brain and channel them into a positive.

Diabetes is tough, that’s for sure. It’s not easy to wake up every morning not knowing if you’re going to have a good day of blood sugars or a bad day of blood sugars. Are the same carbs I ate yesterday going to act differently than they will today? Who knows. Diabetes has made me such a stronger person to be able to handle everything that it throws at me.

I use the phrase, “it could always be worse” a lot when it comes to any negative situation that comes up in my life. I believe, at least for myself, that stress only leads to more stress. So in order to eliminate stress, channel that stress into action. Meaning, take whatever is getting you down or stressing you out, and find the positive of it and do more of the positive.

That is not just something I live by when it comes to diabetes, but life in general.

Today’s DBlog Week prompt is about poetry. I am definitely no poet, but I have written poems in my past. I have no proper training, so I just rhyme a bunch of words that have some meaning to me. I have written two other poems that have changed my life, and this now become number three. I wrote a poem to ask a girl out 9 years ago and then I wrote another poem 8 years later to ask her to marry me.

So, here goes nothing.

Diabetes, Me and You

The day I was vomiting and became very sick,

They couldn’t read my blood sugar from just one simple prick.

They had to know my blood sugar, so bloodwork was taken,

The doctor came back and the diagnosis was not mistaken

Chris, you have diabetes and you need an insulin drip,

You can’t eat or drink, but you can suck on this ice chip.

Educating myself and trying to calm down my mother,

I wondered to myself, who else has diabetes, I couldn’t think of another.

As days to months, and months turned to years,

I accepted the disease and overcame all of my fears.

My day’s now require insulin and blood sugar tests,

But my life is no different than all of the rest.

I created a business with type 1 diabetes to live out my dream,

But I couldn’t have done it without my supporting team.

This includes HCP, friends, family and of course my wife,

If it weren’t for diabetes, she would not have been brought into my life.

I am so happy that this topic is part of this year’s DBlog Week. Even though most of us are advocates, we may not all care as much about certain causes as others do. And as long as we don’t judge each other on not caring as much about certain topics, than that is a good thing. We should put the effort into what we care most about. If you are not passionate about something, it’s pretty much a waste of time.

For me, there are three main areas of concern that I have: Education, Policy and Doing it for the Kids.

Education

When I was diagnosed, I went to the hospital with an 858 blood sugar. I have told this story a lot, but I had all of the symptoms for a couple of months and knew nothing about them or the disease. If I would have just had some basic knowledge of the disease, I could have probably gone to the hospital a lot sooner than I did. This education could be done in a health class in high school or middle school. Of course, I probably wouldn’t have paid much attention to it, but I would have remembered something about constantly peeing every 10 minutes.

After that initial education of general information about the disease, it is alarming how many people with diabetes, don’t really know anything about diabetes. This could be for many reasons, and if it’s from ignorance of the person with diabetes, then there isn’t much we can do about that. However, for those that want to be educated, but can’t because their insurance won’t cover anything more than a 15 minute visit every 90 days, there is something that we can do about that. What is it that we can do? I don’t know, if I had the solution, than I wouldn’t need to be advocating for it.

How do we solve this issue? Maybe something to do with the next area of advocacy.

Policy

There are a couple areas of concern that I have when it comes to policy change: Test strip / Meter Accuracy, Coverage of CGM and Insulin Pumps, and Education.

With the effort from the community recently on the amount of comments on an FDA docket, you can see how a little effort can go a long way. Strip Safely is by far the best place to learn more about advocating for meter accuracy. If you would like to know what you can do to help, please visit the site or reach out directly to any of the founders ( Bennet, Christel, Kerri just to name a few).

There is enough data out there to show that those wearing CGM’s have a better chance to manage their diabetes better than those who do not wear CGM’s. Please, do not try to argue with me that you are doing great management without a CGM, because that is not what I am saying here, so save that for something else. For those that wish to wear a CGM but their insurance doesn’t cover it because it is not a tool used to dose insulin means that a person is not allowed to have one…. that’s just ridiculous.

Also, I live in a state, Florida, where state Medicaid dollars will not cover an insulin pump, without at least 157 hoops to jump through. This is just not right. This is an area that frustrates me because I know how much better my management is with a pump than without it. Once again, Your Diabetes May Vary, so save the argument. But, to not be given the choice of how you want to manage your diabetes is not a way that those with diabetes should have to live. So, how do we go about changing this? We have seen advocacy work in the online space recently with getting insulin pump coverage in the state of Arizona.

Doing it for the Kids

As a kid, I did not grow up with diabetes since I wasn’t diagnosed until the age of 19. However, I grew up aspiring to be a professional football player, which knee reconstruction shot down, but it always felt great to have older football players come in and talk to us and tell us stories and give us the motivation to work hard to get where we wanted to be. This applies to a lot of kids, and I don’t think it’s any different for those with diabetes.

I’ve had the pleasure to attend several diabetes camps, meet-ups, and talk sessions where I was able to talk with kids from the ages of 8-16 and tell them stories and relate to them instead of their parents just always lecturing them. I’ve received emails from parents thanking me because they saw an instant change in the way their child was acting towards their diabetes management, and when that happens, it makes me feel that everything that I do is worth it.

In wrapping this up, don’t feel that you have to be involved in every single issue. If you’re heart is not in it, than leave it to those who are. You will not be judged and looked as a bad person because you are not posting and tweeting about every single advocacy issue that is out there. And if you are judged by that, then the person judging you is just an idiot